This is the transcript for Grief Out Loud Ep. 348 Waiting for Dawn: Marisa Renee Lee on Living with Grief, Illness, and Uncertainty. Find the audio version here.
Ep. 348 Waiting for Dawn: Marisa Renee Lee on Living with Grief, Illness, and Uncertainty
SPEAKERS
Jana DeCristofaro (host)
Marisa Renee Lee (guest)
Introduction
JANA:
Hey listeners, it's Jana. Welcome back to Grief Out Loud. This episode is a conversation with someone you may already know — Marisa Renee Lee. Marisa was on the show a while back, talking about her first book, Grief Is Love, and the ways she's committed to telling the truth about what grief actually feels like. She's back now with a new book called Waiting for Dawn.
In this conversation, we talk not just about the grief of when someone dies, but also about losing parts of ourselves. In 2024, Marisa got COVID, and it turned into long COVID, which dramatically impacted almost every aspect of her life — including her energy, her capacity, her work, and how she moves through the world. Alongside that, she's also experienced other losses, including the death of her beloved dog, Sadie, and the ongoing reality of missing her mom, who died when Marisa was 25.
We talk about what it's like to live in a body that doesn't feel reliable, the loneliness that can come with illness, and what feels similar — but also different — about grieving a death and grieving a version of yourself that's no longer here. Marisa also shares about parenting through all of this: how she talks with her young son about death, about illness, and about what it means to love someone who isn't here anymore.
As anyone familiar with Marisa knows, this episode is going to be heartfelt, funny, and so very accessible. Her new book, Waiting for Dawn: Living with Uncertainty, is out on April 7, and it's one that I think we would all be better off for reading, especially right now. Okay — here's our conversation.
Interview
JANA:
Marisa, welcome back to the show. I am just thrilled to be able to have this conversation with you. For listeners who aren't familiar with you or your story, or how you came to write your first book, Grief Is Love — can you catch them up on why you're here having this conversation with us?
MARISA:
Yeah. I am the grief girl. I lost my mom when I was 25, in 2008. About six months after she died, I just felt like no one had actually explained what grief is really like. We had images from movies and TV shows — everybody goes to the funeral, then everybody goes back to life, as if the thing never even happened. I thought that was completely ridiculous. So I decided in August of 2008 that I was going to write a book about grief and loss that would tell the truth about what grief actually is, how it feels, what it looks like — that wouldn't be sad and depressing, and that would be a New York Times bestseller.
I didn't actually start the book until 2020, right after my husband and I had a really devastating pregnancy loss that immediately took me back to the grief of losing my mom. I realized in that moment that there's nothing to get over. You don't get over it when you lose someone you love — you figure out how you're going to live with it. I wrote an article for Glamour that Mother's Day weekend in 2020 that basically presented that thesis. It turned out a lot of people agreed with me, and by the end of the summer I had a book deal. Grief Is Love came out in 2022, and my next book, which focuses on uncertainty, is out on April 7 of this year.
JANA:
The new book — Waiting for Dawn — I just had the pleasure of finishing it this week, and I'm really excited for it to be out in the world. This past February marked another anniversary of your mom's death. How did it land this year?
MARISA:
Unfortunately, I was super sick. I have long COVID, and at the end of January we all caught whatever germs were going around at school — my four-year-old will just cough right in your mouth. It's absolutely disgusting. So I spent most of February sick, but still tried to hold space for reflection and also celebration, because the anniversary actually comes ten days after her birthday. I always bake something. I've been obsessed with this olive oil from a farm up the road where I live in the Hudson Valley, so I made an olive oil cake that I think she would have really liked. I really liked it — and ended up eating most of the cake myself.
It was a little bit sad, but honestly, it's been 18 years, and the main feeling was more surreal. What I wrote on Instagram was: if my grief were a person, they could go to war. They'd be driving, graduating from high school, maybe trying to sneak into a bar. It just seems so wild to me that it's been that long since my mom and I were in this world together. So yeah — surreal was the big feeling.
JANA:
How have you tried to share your mom with your son?
MARISA:
Oh, we talk about her all the time. The way he talks about her, you'd think she was going to walk in the door tomorrow. It's so natural — so lovely to see. I feel like people really struggle with kids and grief and death. Unfortunately, in the four and a half years since we adopted our son, I lost both grandparents who he had met. My grandmother in particular — he was really close with her, and that was a hard one for him. We also lost my husband's mother. He's seen a lot of grief, and I think it has made him a better griever than a lot of adults I know.
He said something that is going to be the title of my yet-to-be-written children's book: "I'm going to love you until forever." When he said that to me, I was like — yes. That is exactly how I love my mom, and how I know I am being loved in return. Seeing him understand that was really cool. He's also helped me with some of the ways I memorialize her. She loved lilies. I do not have a green thumb — I'm not some expert gardener — but I can stick bulbs in the ground, dig a hole, throw a little fertilizer on top, and you get these beautiful lilies in the spring. He knows those lilies are connected to his grandma Lisa.
My dad was visiting a couple of months ago. There's a picture of my mom in our kitchen from when she was young — early twenties, pre-mom years. My son pointed to it and asked my father: "Do you know her? Did you know her too?" — not quite connecting that my mom was married to his grandfather. Kids will keep you guessing.
JANA:
That makes me want to ask a question so many parents struggle with and call us about all the time. Your family has experienced a number of losses since your son came into your life. How do you tell him? What words do you use when talking about family members who have died?
MARISA:
I have the benefit of having a best friend and college roommate who is a clinical psychologist. The loss we really felt we had to prepare for actually wasn't a person — it was our dog, who passed away at the end of 2024. My husband and I had planned to have a vet come to the house while our son was at school and let Sadie pass comfortably at home. So we had to figure out what exactly to tell him when he came home.
The language we used was: "Sadie's body stopped working and she died. She's not here anymore for us to play with, give dinner to, or take for walks. But you can still love her. You can still talk about her. She definitely still loves you. And unfortunately, this is just what happens — I'm sorry, but this is just what happens." He said okay and seemed totally fine with it until bedtime — when I was both grieving and exhausted after weeks of caring for a sick dog while being sick myself. That's when the questions started. "Can you make her body work again?" No. "When somebody dies, their body is completely shut down and it's gone." And he sat with it, and he got it.
The next day when I picked him up from school, he had told all the other kids that Sadie had died and her body had stopped working. I thought, oh no, am I going to get texts from every parent in the class? But his teachers said it was really nice to see.
JANA:
So here you are — committed in your young adulthood to telling the truth about grief — and now your son is carrying on the family tradition of telling the truth about grief to everybody.
MARISA:
Oh yeah — and telling everybody. When my grandma passed away over the summer, the teachers at school were sending their condolences. I was like, oh my god, he came to school and told you his great-grandma died. That's Bennett.
JANA:
Can we talk about Sadie for a moment? Our dog Captain died December 8, 2024, and then I saw that Sadie also died in December 2024. I didn't know what day.
MARISA:
I believe it was the tenth. We realized something was wrong when my husband noticed a little bit of blood in her water dish. I have a cousin who's a vet, and I texted her that weekend — how concerned should we be? She said she was actually pretty concerned, especially given Sadie's age. She was about fourteen. She told me to call a practice she used to work at, said they'd get us in right away. That Monday I called first thing — I'm sick with long COVID, I have a sick kid home, and now a sick dog — and they said, "Can you get here in fifteen minutes?" We rushed in and learned she had a mass in the back of her throat the size of a small plum.
You feel so bad because animals can't complain. They can't tell you anything. She had been playing normally, eating normally, pretty much being her older-dog self. They thought medication might give us a couple of months, but a couple of weeks later we could tell she was just in pain. She didn't even want to eat treats anymore. My husband and I agreed: there's no reason for her to suffer unnecessarily. Putting a dog down a couple of weeks before Christmas is the saddest thing ever, but I know we did the right thing for her. That's what we tried to prioritize throughout those last weeks — this dog has been so good to us for twelve years. How do we do right by her?
JANA:
With the death of your mom, Sadie, your mother-in-law, your grandparents, your cousin Imani — you've had so many losses. How does the grief around Sadie's death feel in comparison? Even though it's a strange word to use — comparison.
MARISA:
It was interesting. She'd been with us for twelve years. She was the first dog I ever had. My now-husband and I had been dating for about six months when he moved in, and a couple of months later we got a puppy — which was completely ridiculous. But once we got the dog, I said, okay, we're just going to have to get married, because I'm not going to co-parent a dog with you. I'm not giving up my dog.
It hit harder than I expected. I knew for about three weeks what was happening. We also knew she was getting up there in dog years — that had been in the back of our minds for a couple of years. But then to not have her at all was just devastating, especially because at the time I was mostly homebound from being so sick. She was my company. She was the one lying beside me while I watched back-to-back episodes of Emily in Paris because I was too sick to do anything else with my life. In her absence, you realize how incredibly generous animals are. Once you are their person, they're just there. They offer up love in a very straightforward, uncomplicated way that will always be different from human relationships.
I also found myself asking — did I do enough, while she was here, to express my appreciation for the role she played in our family? She was just such a good dog. One day we suddenly brought home a newborn baby, and she had to adjust to that reality. Instead of avoiding this screaming, irrational newborn, whoever was on the 2 a.m. to 6 a.m. shift — she was there. Right in the middle of it. Lying at your feet, wanting to be part of everything. She was a really special dog.
JANA:
That's a big piece of losing a pet — they get so woven into the fabric of everyday life. Sometimes they fade a little into the background, but they're always there. And then when they're not, there's this huge hole in the house.
MARISA:
I still have moments where I come home and think I'm about to be greeted at the door by a dog. That's obviously not the reality anymore. It's been an adjustment. But at this point we've decided we're fully ready for another dog, and we're going to start the search soon.
JANA:
Hopefully Sadie will be supporting you in that process from wherever she is. She might have some opinions about who comes next.
MARISA:
Yes, she definitely will.
JANA:
Your new book, Waiting for Dawn — the general theme seems to be: how do we live with uncertainty, and how do we create space and structure to care for ourselves? That's valuable for everybody all the time. But it seems very specifically connected for you to the long COVID diagnosis you received in 2024. Are there parallels between grieving a diagnosis like that — grieving your health, your capacity — and grieving the death of a person?
MARISA:
I felt like it was different, in the sense that when you're grieving — whether it's a pet, a parent, a spouse, a child — there's something more external about the grief. It's a human being who existed separate from you. Whereas with this, I felt like I was the loss. I have to live inside this grief, because there's no escaping it, no changing the situation, no taking a break. I just have to figure out how to live well in this space of constant grief and uncertainty.
I've gone back and forth, and I don't think I have an answer yet — not that it necessarily requires one — but I keep asking myself: is this worse than when I lost my mom? In some ways, I think yes, because it's more destabilizing to your individual identity. And at this phase of life, I'm not just responsible for myself. At twenty-five, I was just responsible for Marisa. If I was having a bad day with grief back then, I could go out with friends and at least forget about it for a couple of hours — not necessarily the right thing, but for a twenty-five-year-old, totally reasonable. There's none of that here. I don't really drink much anymore because of how long COVID works in the body. I can't take a respite from it.
I remember going to Puerto Rico six weeks after my mom died, and then my godmother sent me and some friends to Hawaii a few months later. There were spaces, at least, where I could give myself room to heal and just have fun. With this, it's been much harder to access that because my body is so weak. There's no break from the pain. I've woken up in some amount of pain pretty much every day since early 2024 — and that breaks my brain a little bit. And then on top of that, my responsibilities are real. I'm the primary breadwinner. I have a mortgage to pay. I have a child with a part-time nanny because I can only do so much right now. That's been really challenging.
JANA:
It's such an important point — never being able to get away from it.
MARISA:
No, I never get away. I was very, very committed to making it to the Beyoncé Cowboy Carter concert last summer. I made it, and a friend — my friend Emily, bless her heart — managed to get us a box, so I had a seat where I could put my feet up and was protected from the rain. It was truly the best possible circumstances. But it was too much walking. I was in pain the whole time I was there, and it took about five days to recover from that one night. So even when I've tried to build in breaks, it hasn't always worked out. Just figuring out how to accept a painful life while moving forward to something better has been my primary focus these past few years.
JANA:
What are a few of the footholds you've found to be able to live in that place — accepting a painful life, as you said?
MARISA:
Some of it is faith — my commitment to my faith. And connected to that is hope. Not hope as a synonym for optimism, but really believing that if I do the right things, they may not add up to feeling better tomorrow, but they will add up to feeling better in a month, in three months, in six months. And thankfully, that's what I've seen over the past year.
The hardest thing for me is that the most important thing in this process has been rest — just being still. That is completely out of alignment with my personality. But when you find yourself in a state of uncertainty, you have to figure out what is going to help you get through it. It may be things that are uncomfortable or unexpected, but if you want to get through it well, you have to do those things.
I've also tried to reach for smaller joys. I have a friend, Cindy Spiegel — she's an author who writes about micro joys, these brief little things that can carry you through. So I've started playing with watercolors. And this is so dorky, but I got a potholder loom, and I can weave and make potholders for people. So random. But it was something I could do without taxing my body or my mind, and it felt productive.
And help. I ask for and accept a lot of help — free and paid, from family and friends near and far, from colleagues. I've had to get very comfortable accepting weakness.
JANA:
You know, I originally asked you about the parallels between grieving a chronic condition and grieving a person, and we talked about how different they feel. But one thing I'm hearing you say that sounds familiar is recognizing how much a death can change us — our sense of self, our values, our capacities — and how there can be grief for who I used to be, in addition to grief for the person. I wondered: with your mom's death, were there things you discovered where you realized, I can't keep doing what I've always done?
MARISA:
What I did wrong for probably the first three years was keep trying to get back to a person who no longer existed. I wanted to be the Marisa before she became the motherless daughter. And that just isn't possible. Having that understanding from the loss experience has actually been helpful with long COVID, because I know I am a completely different person now than I was in January of 2024 — completely different — and I'm okay with that. I see the growth as a positive thing. Do I wish I didn't have to have long COVID to learn a lot of life lessons? Yes. But it is what it is.
Accepting the transformative power of hardship — whether it's grief, uncertainty, or something else — is really important, because it allows you to stop fighting to get back to someone who no longer exists.
JANA:
I want to ask you something a little personal — I'll share a bit of my own experience so you can see if it resonates. My dog Captain died in December 2024. Then in February 2025, I went in for a routine optometrist appointment, mentioned something felt off in one eye, and that started a whole process that led to a diagnosis of vitreous macular traction in my left eye. It sparked this panic — I'm going to lose my vision, I won't be able to work, I won't be able to drive, I won't be independent. After about a month of that, I realized the medical condition and all the emotions around it had actually stolen from me the ability to sit with my grief over Captain. The health scare was interrupting and creating an obstacle to accessing grief for a loss that wasn't even related to it. Did you experience anything similar, dealing with losses while navigating long COVID?
MARISA:
That's a good question. With Sadie, I felt like I gave myself permission to grieve, and I also knew that loss was going to negatively impact my health — because anything that stresses the body is bad for long COVID. So it was hard, knowing I was in more pain because of the grief. When I would recognize that and try to reckon with it, I'd tell myself: you were so lucky to have her. This sucks, but it's temporary, and you wouldn't change anything about that dog and your relationship with her. You have to be okay with carrying additional grief, even when it costs you physically.
With my grandmother's passing, the thing that was upsetting for me — which is similar to what you're describing — is that I had to reckon with the fact that if I hadn't had long COVID, I would have seen her more in that last year of her life. I know that's not something she or anyone else would ever hold against me. But practically speaking, there were a lot of weekends when I wasn't strong enough to leave my house, and if I was, I might have to take my son somewhere on the other side of town, which would mean I wouldn't have the energy to also go to her place, twenty minutes in the other direction. So I felt like my illness robbed me of a few more afternoons with her — and with my son, who was hilarious with her. They were just so funny together, making fun of each other and laughing and being loud. My son will randomly say, "Remember when great-grandma used to say that thing?" And I think: I just wish I could have given you more.
JANA:
Another thing I think about with both grieving a death and grieving a chronic illness is the loneliness that can come with it — it's not always visible to other people, and even when it is, it's not always easy to find people who understand or can connect with your experience. What has your relationship been with that kind of loneliness?
MARISA:
Oh, it was awful. There was a period of about six months, maybe a little longer, where talking was very challenging — crazy chest pain, shortness of breath. At one point my lungs were so tight, and the asthma was so bad, that they were concerned there might be some other kind of blockage. Another time my larynx was blocked over seventy percent. The air just wasn't traveling properly. When your body can't distribute oxygen, that's a serious problem. So I couldn't talk to my friends, let alone go out to dinner or visit people or have people visit me. It was devastatingly lonely, and there wasn't much I could do about it.
On a day when I thought I could talk for maybe an hour or ninety minutes without it being a problem, I had to save that for my kid, my husband, my work. I couldn't give it to friends. I remember my childhood best friend — who also works with me — stopped by with her husband and their daughters around Thanksgiving. They were at our house for about ninety minutes. She knew how sick I was; she was watching the clock the whole time. It was so lovely. But after they left, I was so exhausted that I had to recover for a day and a half from a ninety-minute visit.
There was also this feeling — which I think happens a lot when we're grieving any loss — of being behind, off track, out of step with life milestones. I finally had to get to a place where I could say: not every track is the same. If there are things that are meant for you, you're not going to miss out on them. They'll come around when the time is actually right. Because the time isn't right when you're deep in a recent loss, or when you're seriously unwell.
JANA:
That sounds like going back to the faith you mentioned — just trusting the course of things.
MARISA:
Whatever is meant for you is meant for you. I decided I was going to write a bestselling grief book in 2008. That didn't actually happen until 2022. Other fun things happened in between, to be clear — but it takes time.
JANA:
You've learned to have patience with the unfolding. What I know of you is that you are a producer and a hustler — and I mean that in the best possible way, like getting a lot done, being a very high-performing person. When grief comes, when long COVID comes, there are interruptions to that capacity. And then I think about who in our society gets more of a privilege to rest and not produce. As a Black woman in the US, how does all of that play out — the pressure to produce alongside the need to step back?
MARISA:
It took a while for me to get comfortable with the idea that I just can't work like that right now. I finally had to say to myself: yes, the work you do in the world matters. My consulting is pretty much all equity, social justice, politics. My writing is about grief, loss, uncertainty, healing. This stuff matters — especially at this moment in our country. But it's not more important than your body. If you're not well, if you don't get well, you're not going to be able to produce in the ways you want to anyway. So you just have to sit the f*** down. There's no two ways about it. Right now you're in timeout. You'll get back out there.
And from a privilege standpoint: as hard as navigating long COVID has been — navigating the ridiculous US healthcare system as a business owner, as a mother, with all of these responsibilities — I had to acknowledge that in terms of privilege, I am about as privileged as a Black woman can be in America. I had the economic privilege to hire a part-time nanny, to pay for treatments out of pocket, to go to acupuncture, to set up extra therapy sessions when I was feeling stronger, to pay for more delivery meals. Whatever I needed to throw money at, I mostly could. And I thought about that a lot, because there are so many people suffering with physical or mental health challenges who don't have that same access. It's really enraging. I want our country to be better at centering the care of human beings, but in a nation so deeply committed to capitalism and white supremacy, you just don't get that.
I think it's incumbent upon those of us who do have some measure of privilege to advocate for those who don't. One of the things I've been able to do — with both Grief Is Love and Waiting for Dawn, during this long COVID situation — is partner with funders and a bereavement researcher and professor at Harvard to produce research. The first study was about how we can better support Black and Brown kids who lost caregivers during the pandemic. When children lose a primary caregiver, all of the outcomes worsen — economically, educationally, in terms of violence. All of it increases. The next project will focus on how we can better support people navigating uncertainty, with a sub-focus on new disability — what it's like to go from being perfectly able, or even exceptionally able, to not able at all. It's an interesting experience.
JANA:
One last question before we talk about your book being out in the world. Your mom dealt with health conditions for years before she died, and you were a caregiver for her during many of those years. What did you learn from watching her go through that experience — things you've either carried into how you're navigating long COVID, or things you've actively worked against?
MARISA:
It's so interesting, because I was really young — my mom first got sick thirty years ago this year, so I was only thirteen. My memory is that she basically did everything perfectly, but I'm like, that's probably some grief-tinted rose-colored glasses. There's just no way. This woman was a Sunday school teacher, PTA, Jazzercise — super efficient mom of two — and then suddenly got sick one day, was on disability a couple months later, and a few years after that we learned she had permanent brain damage and multiple sclerosis. There's no way she did all of that perfectly.
But what I remember is her comfort around asking for help. Especially once she had breast cancer — she was very good at it and seemed very comfortable accepting it. She also seemed comfortable, when she needed to, with accommodating her limitations. The MS was the relapsing-remitting type, so sometimes things were worse and sometimes a little better. When they were worse, she attended my high school graduation in a wheelchair. I know there's no way she loved that, but she modeled it as if it was perfectly fine. As a parent now, I think that was more of a parent move than a reflection of how she actually felt — but it has made me feel like I need to be more comfortable with the things I need and with asking for help, because she did such a good job of it, real or not.
And this one I know is real: she was deeply committed to having fun and creating joy — for herself, for her kids, for my dad, for friends. And she was incredibly vain. No apologies. I had to cancel a nail appointment after she died, because at the end of her life — no longer undergoing active treatment for breast cancer or MS — she was still having a manicurist come to the house to do her nails. That was real.
JANA:
I said that was my last question, but I have one more — a short one. Watching your mom navigate her MS and then breast cancer while you were a caregiver: what are the ways you're now talking to your own son about your experience with long COVID, to support him?
MARISA:
We've had to be very careful, because in the beginning he definitely had some anxiety around it — thinking that anytime somebody got sick, they might be sick for a really long time. I remember one night he was crying. He just had a cold, a silly kid cold. This was about a year ago. He's crying and saying, "I don't want to be sick," and my husband and I are looking at each other like, what is happening? And then he said, "I just don't want to be sick forever and ever." We looked at each other and were like: oh, yikes. So we had to have some conversations. "Mommy doesn't feel good right now, but she's going to be fine" — you keep it light, you keep it not a big deal.
But he's also been really good at adapting. Because of my husband's work schedule — he's a professor — I've been the primary person taking Bennett to school throughout my entire illness. My kid is a bruiser. He's just a solid, muscular four-year-old. I remember thinking, I can't pick him up — or I can, but I'm going to pay for it badly. So in the fall of 2024, I said: you're going to climb into the car and climb into your car seat. And he did it. It was one of those moments where I thought: kids can do whatever you expect them to do. When they do something they perceive as a challenge and do it well, they're so proud. He was super proud of himself thinking he was this big kid climbing into his car seat. And I was just thinking: thank God, because you're chubby and I cannot pick you up.
JANA:
I appreciate you sharing that — the importance of distinguishing for him what the word "sick" means in different contexts. We talk to parents and caregivers about this all the time. If you tell a child that grandpa died because he was sick, you have to give that sickness a name, otherwise kids can start thinking that every time someone gets a cold, they're also going to die. Your book, Waiting for Dawn, is coming out April 7. What are your dreams for it being out in the world?
MARISA:
I would like this book to land in the hands of millions of people, because unfortunately, we are navigating a period of collective uncertainty. This book isn't a step-by-step guide of what to do so you'll feel better. It's more of a compass for navigating uncertainty when it happens to you. It's not a book about long COVID — it's a book about coping with overwhelming stress related to the unknown. That's how I define uncertainty in the book. And it has extensive research that supports the recommendations, so it's not just Marisa's story of the last few years. I'll also say: there are a lot of heavy topics, obviously, but it's pretty hilarious too. I promise that if you read it, you are not going to be thinking all doom and gloom.
JANA:
Absolutely not — I can attest to that. And as you know from listening to Marisa for the last forty-five minutes, there is no way she could write a book that was all doom and gloom. That could not happen. Thank you so much, Marisa, for making time in your schedule to talk with me and with our listeners about all the various aspects of grief, and about your new book, Waiting for Dawn. I'm just grateful that you're here and that you're a voice in this field.
MARISA:
Thank you for having me. This is great.
Outro
JANA:
And listeners, I say this to you each and every time: I am so grateful you're tuning in. Sharing episodes with people who might be interested in or helped by the conversations we're having here makes a real difference. You can always reach out to me at Grief Out Loud at dougy.org — that's D-O-U-G-Y dot O-R-G. That's our main website, where you'll find information about our local programming, all of our free downloadable resources, and of course, each and every episode of Grief Out Loud. You'll also find information about our trainings for people who want to learn how to better support kids, teens, and students who are grieving. We have online learning and webinars, so head to the website to find out more.
The podcast is sponsored in part by the Chester Stephan Endowment Fund. Thanks again for listening — we hope you'll join us again next time.